tinaott

I dont know about the rest of your, but many times I feel like Im fighting this thing alone for my child.. and I dont mean no support from my husband, because i have that.. but sometimes I wish there were local groups I could talk to. In NJ everything is in North Jersey.. nothing for the South so I started a South Jersey PANDAS support FB page..with hopes that if I get enough members then we can eventually start in person meetings monthly. I really hope this goes well.. it would be nice to know a local mom/dad struggling through what we do. The group is called P.A.N.D.A.S./P.A.N.S./P.I.T.A.N.D.S. Parents of South Jersey https://www.facebook.com/profile.php?id=1517243699#!/groups/288595321209854/

Look into LDN (Low Dose Naltrexone). At low dose it helps the underlining issues with autoimmune disorders. You will have to get it from a compounding pharmacy..either through pill or cream. Many insurances cover it but if it doesnt it runs about $40. My son has done MB12 injections, Transfer Factor, LDN, etc. He also has a mutation of MTHR and we suppliment him with methylfolate. Oh..also the LDN helps with the dysbosis the antibiotics have caused. :-) Thanks Tina

I did want to add one thing. When my youngest had his first occurance with the vomiting (the time he testing slightly positive for strep), a few weeks prior he suddenly started wetting the bed... after antibiotics he stopped wetting the bed and still is doing good with that even with the two other periods of vomiting..... Im just so baffled on whats going on.

Im at my witts end trying to figure this out. My 6 year old son has PANDAS and is on continuous antibiotics. I have a 3 year old son who a few months ago had a few weeks of unexplaned middle of the night only vomiting followed by loose stools during the day. During this time my PANDAS child was in a major flare mode. Finally took my youngest to the drs when we noticed his throat was swollen and the fast strep test came out barely positive and we had out whole family treated with antibiotics. Both kids got better. A few weeks later same thing happened..my youngest had unexplanable night vomiting for days with loose stools during the day. Took him back to the ped, they found nothing, strep came back fine. No other symptoms once again and was acting completely fine the rest of the time. But again, my PANDAS child was off the wall once again..we explained to the ped about PANDAS and my other son so due to this he placed my youngest on antibiotics anyway just incase. Sure enough..both kids got better. Now for the third time..my PANDAS child is off the wall once again and my youngest started the loose stools 3 days ago and the vomiting last night. Took him to the ped again, this time irritated, and they cant find anything wrong.. throat looks fine, no symptoms not even a runny nose. He is developing fine, no abnormal behavior to make me think PANDAS, no skin rashes or any other issues to think food intolerance (though he is on restricted diet with my other child, no dairy, beef peanut, egg, etc). The ped mentioned maybe my other son is kickign something out with the antibiotics which is making my youngest sick. But if he is so typical then why isnt it showing up? Does anyone have any problems with sibling illnesses? Other then chronic ear infections as a baby/toddler, we have had no developmental issues/behavior issues/tics/ocd or anything abnormal with my youngest. Thanks Tina

So we got my sons result today from the Neurologist.. his Cam Kinase II is 162. he said thats part 1 of the test. What is part 2? he also said this confirms a pandas like autoimmune disorder. I see normal is 90.. so is 162 moderatly high, incredibly high?? Thanks, Tina

So we got my sons result today from the Neurologist.. his Cam Kinase II is 162. he said thats part 1 of the test. What is part 2? he also said this confirms a pandas like autoimmune disorder. I see normal is 90.. so is 162 moderatly high, incredibly high?? Thanks, Tina

I have been leaving voice mails for Dr. C as well as emails and Im not getting any return calls/emails.. We had to stop my sons protocol to do this testing and Im having difficulty getting a test kit. My son has abnormal MRI's so I dont know how much longer I can hold out. Whats the typical time frame for her to get back to someone about sending out a test??????? Im going crazy over here. Thanks Tina